Hospital denies life saving transplant to child because of special needs

[SamH]

And the Keto diet is the only treatment option for epilepsy? Maybe the British simply don’t have as much confidence in it or it isn’t as popular with parents; who knows? The fact is, when the numbers are compared, health care in all developed countries is similar in quality - the only difference is that America pays more.

Then again you probably don’t know what you are posting about.

Actually it is the treatment of last resort - one that we had to use with our son. On several websites parents in the UK actively solicit for the Keto Diet menus because they can’t get them in the UK. The actual diet is fairly cheap to administer - usually the patient can eliminate most or all the drugs they are on. The problem is the child SHOULD be admitted to the hospital for a week to start the diet - a cost that their health care system refuses to absorb. So instead the doctors continue to prescribe medications that don’t work to children that suffer needless and left untreated will undoubtedly become life long wards of the state.

The Keto diet was the basic treatment used before many epilepsy drugs became available - it fell out of favor when it became easier to give a pill than to stick to a regimented diet. It came back into play when researchers found how many people were not being helped by modern drug treatment. Over 30% of people have drug resistant epilepsy. That’s why Johns Hopkins researchers developed the diet.

 

[SamH]

The NHS works by only including treatments if they work effectively (and are cost effective in comparison to how well they work) after being peer-reviewed. If this “Keto Diet” was so awesome then it would be included. Seems a bit unfair to judge the entire NHS on one treatment.

.

The NHS does endorse it - they just don’t like to use it because it requires a child to spend a week in the hospital.

As for being unfair - I am judging it on my personal experience - why would I judge it on someone else’s experience?

 

[Ridgerunner]

This is not about political ideology, it is a power play among doctors: primary care physicians versus specialists and I say shame on anyone who ‘dumps a sick person’ no matter what excuse they use. Most doctors I know personally, regardless of their faults, would not ‘dump’ a patient over reimbursement.

But if I have to go by the conservative ideology prevalent on this forum, there really shouldn’t be a problem if the chronically ill have no access to routine care: emergency rooms cannot refuse them care, or so I’ve been oft reminded…(Let them eat cake?)

Of course it’s about ideology. This administration goes on and on about how it’s going to solve America’s health problems with prevention. It’s nonsense, because most people who are well right now will be well next year too, and the year after. A person with a chronic condition will be sick now and sick next year too. So it increases the reimbursement rates for well care, making it more profitable for providers to “treat” well people than sick ones. Are insurance companies in on that? Yes, because their rates are based on Medicare rate. They don’t negotiate insurance reimbursement code by code. They do it as a function of medicare rate as a whole. I know. I used to negotiate rates. It’s extremely unusual to negotiate a single code.

Doctors are dumping chronic patients right and left and pushing “well care” every way there is to do it. Primary care physicians are on the bottom of the physician food chain, and will soon mostly be replaced by less expensive NPs and PAs, and they know it too. Their pay is far from princely, and is based on what they bring in. Their organizations do not want chronically ill patients because they are difficult to deal with and consume time, and they penalize primary care physicians for having too many of them.

Conservative ideology? I really don’t think Obamacare represents conservative ideology, and it represents “liberal” ideology only in the sense of making more and more people dependent on the government, or think they are. When it comes to the truly needy, I am probably well to the “left” of Barack Obama. Their treatment has been shameful under this administration. But I guess I would share with conservatives the realization that Obamacare mandates have already, and will even more in the future, cause the cost of health insurance to go up for a lot of people and, (as Obama himself admitted) probably won’t cause any more people to be covered than there were before Obamacare. Before Obamacare, child-only policies, for example, were really cheap. Now, because of mandates, they’re almost prohibitively expensive. But what? I guess the parents who would like to buy those policies can eat cake. Right?

 

[Ridgerunner]

Ironically, the American government spends more tax dollars on their healthcare system per person than the British government does on the NHS (in dollars, per person). So it always makes me laugh when people say that they don’t want their taxes being taken for paying for someone elses healthcare like they do in Britain, because quite frankly it’s happening already - and you’re getting less than I am for it.

Probably you are, if you think you are, but I doubt everyone is. There is a difference between healthcare here and in most countries. In the U.S., they “do it all”. If there is a treatment that works 1% of the time, they’ll do it. If there is a test that only detects a problem 1% of the time, they’ll do it. That is not true in other countries, where such tests or treatments are not considered “cost effective”. I have not seen the data on Britain, but I have seen, by way of example, where there are more MRIs in Pittsburg, Pennsylvania than there are in all of Canada. That’s because they use them a lot more in the former than in the latter.

I am not sure what all is “counted” in Britain either. I do know, that the cost statistics in France, for example, compared to the U.S. are skewed by the fact that France pays for medical education, malpractice insurance and has special courts for malpractice cases. Also, illegals there are “cash up front”, unlike here.

I’ll have to look into it a bit more, but I doubt very much that cost comparisons count everything.

 

[Ridgerunner]

Ironically, the American government spends more tax dollars on their healthcare system per person than the British government does on the NHS (in dollars, per person). So it always makes me laugh when people say that they don’t want their taxes being taken for paying for someone elses healthcare like they do in Britain, because quite frankly it’s happening already - and you’re getting less than I am for it.

One part of it seems to be that the agency called “NICE” (?) decides what treatments are cost effective and which ones are not. There are a number of cancer treatments, for example, that are simply not provided by the NHS because they are not deemed “cost effective”. It’s not that those treatments don’t work. They are just more expensive than the government wants to pay. So they’re not available. It should be admitted, though, that the U.S. is probably not far from that, given that Obamacare provides for a panel that looks quite a bit like NICE and will probably serve the same function.

Probably more to it, as well. We’ll see. But certainly if a healthcare system cuts out tests and treatments that it feels are a burden to its budget, its overall cost per capita will be lower than one that allows for those tests and treatments.

 

[Cider]

Not surprising. When my child was born with Down Syndrome the hospital offered to starve him to death for us (and typing this nearly makes me want to vomit!).

The “nice” doctor (a pediatrician dedicated to helping children!!!)) offered to feed him on demand and to sedate him so he wouldn’t feel pain.

He told me that newborns with downs wouldn’t demand food, and that he would slip away and that we would be able to go on and have a healthy family, since this child would be a burden to us.

This child is right now baking muffins with his mom in the kitchen, and I’m trying (unsuccessfully) not to cry so that they don’t ask me what the problem is.

I’m crying reading your story. I don’t even know what to say. That Dr should have his medical license taken away. How absolutely horrifying.

 

[Cider]

This was posted yesterday but closed because it linked to a blog post instead of a news article. It’s hit the news now. An adorable 3-yr-old girl named Amelia has 6-12 months to live if she doesn’t get a new kidney. Her family isn’t asking for a donor kidney, but is giving one themselves. They just need a surgeon to do her surgery.

The Children’s Hospital of Philadelphia kidney transplant doctor refuses to do her surgery because the girl has an intellectual disability. He says she won’t have any “quality of life” to have to continue living with “mental retardation” so he’d rather she just die. The doctor then berated the mother for her and her family loving the little girl and being informed and involved in her care.

The hospital put a press release out on their facebook page. It’s mumbo-jumbo lawyer talk which says that it wasn’t just because she has an intellectual disability, but also because she won’t live independently when she’s an adult. In other words, it is just because of her lower IQ. The American Journal of Transplantation directly refutes this as a basis for denying transplants, which I’ll post as a follow-up.

Two more women have come forward saying the same hospital discriminated against others in the same way.

“We were told that at CHOP that our daughter would not be eligible for a liver transplant because of cognitive impairment and because she would not achieve ‘independent living’ - those were the reasons given. Not medical ones, but ones based on value-judgements regarding intellectual disability.”

“I might be willing to think there is some other reason behind Amelia’s denial if I didn’t know another family that was told something very similar recently. Spin PR all you want to, but please think seriously about revising your policies.”

News Article: examiner.com/special-needs-kids-in-nashville/hospital-denies-life-saving-transplant-to-child-because-of-special-needs

Mom’s Story: wolfhirschhorn.org/2012/01/amelia/brick-walls/

A Petition: change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive

The Hospital’s Facebook: facebook.com/ChildrensHospitalofPhiladelphia

I’m outraged that they think they have the right deny this child a life, even more so when it’s a family donation.

 

[LemonAndLime]

One part of it seems to be that the agency called “NICE” (?) decides what treatments are cost effective and which ones are not. There are a number of cancer treatments, for example, that are simply not provided by the NHS because they are not deemed “cost effective”. It’s not that those treatments don’t work. They are just more expensive than the government wants to pay. So they’re not available. It should be admitted, though, that the U.S. is probably not far from that, given that Obamacare provides for a panel that looks quite a bit like NICE and will probably serve the same function.

Probably more to it, as well. We’ll see. But certainly if a healthcare system cuts out tests and treatments that it feels are a burden to its budget, its overall cost per capita will be lower than one that allows for those tests and treatments.

NICE does assess drugs and treatments, you’re right. Well, sort of. They provide the prescribing guidelines etc. It’s not just about cost, it’s about the % of time they work. If something only works 10% of the time for example it’s not likely to be included on guidelines for prescribing medications for someone who has cancer. The statistics I’ve seen have been government spending on the whole of the NHS.

What you said about how in the US its ‘all’ available treatments sounds like it would either work well or won’t. One of the problems with the NHS in this country is that not all drugs are available so many people have to pay for it themselves as you’ve mentioned, which I don’t think many people can argue with as everything is ‘free’ anyway. I pay about £20 a month towards the tax that goes towards the NHS, and that’s cheaper than the private medical insurance here.

 

[L_piperatus]

What does this have to do with Sebelius and Obama? This is about a disabled child whose parents are trying to save her life. Is nothing safe from divisive politics? Similar things have happened under other administrations, or have you forgotten Terri Schiavio?

Of course there always are potential or actual murderers proposing or actually practicing euthanasia regardless of who is in charge in Washington DC. But the difference is, Sebelius and Obama (as well as the mentioned state governors - Rod Blagojevich in Illinois, and Christine Gregoire in Washington state) have taken an active role in helping the murderers and penalizing pro-life healthcare professionals who refuse to participate in murder.

Case in point: you cannot be a practicing pharmacist today in Washington state if you refuse to stock and dispense abortive drugs such as Plan B and Ella. Blagojevich passed a similar law in Illinois, but luckily it was overturned by a judge recently. Now, there are both a proposed House and a Senate resolution drafted by the Democrats, which would impose the same immoral mandate on all pharmacists federally - that means, the Democrats will chase out of business ALL pro-life pharmacists across the USA, if they get their way. Obama and Sebelius, in their turn, eliminated all conscience protection regulations and left only a fig leaf of protection for doctors and nurses refusing to participate in surgical abortion.

Today it starts with abortion, tomorrow it will be expanded to euthanasia of disabled babies. This is what the Democrats do - Obama, Sebelius, Blagojevich, Gregoire.

Regarding Bush and the Terri Schiavo case, please remember that Bush recalled Congress and Congress tried to pass a law specifically to protect Terri from her court-ordered murder through starvation. Unfortunately the courts stepped in, and they shot down the efforts of President Bush, and the efforts of the Republican-led Congress. So, yeah, Terri Schiavo was murdered under Bush’s presidency, but it’s not like Bush didn’t try to save her. Obama, interestingly, broke with his pristine pro-death record in the Terri Schiavo case, and as a senator voted in favor of Terri’s Law (in favor of the failed attempt to save Terri’s life). Later on, Obama said he regretted that particular vote on his part.

Edit: It is for reasons such as this that I say, healthcare will never be the same again, if Obama gets another four years, and if the Democrats get a majority in Congress once again. They are already tightening the noose around the necks of pro-life healthcare professionals, and if they get the chance, they will pass laws that will effect the “total transformation” of the healthcare system. Pro-life professionals will be chased out of business, because they will pass federal laws similar to the state laws enacted by Blagojevich in Illinois, and Gregoire in Washington state. That means, pro-life professionals who refuse to participate in murder, will be forced to close shop and find another type of job for themselves. Then, we will be left with those who are too weak or confused to protect human life, and worse, with wolves in sheep’s clothing, with pro-death healthcare professionals with an eugenic mindset, who actively embrace this stuff and frankly, are morally on the same level as the Nazi doctor Josef Mengele.

So, there you go, “total transformation of America” - that’s what Barack Obama promised, and that’s what he will deliver also in the field of healthcare. He, and the Democrats, will enact that change by passing immoral laws and regulations.

 

[Ridgerunner]

Edit: It is for reasons such as this that I say, healthcare will never be the same again, if Obama gets another four years, and if the Democrats get a majority in Congress once again. They are already tightening the noose around the necks of pro-life healthcare professionals, and if they get the chance, they will pass laws that will effect the “total transformation” of the healthcare system. Pro-life professionals will be chased out of business, because they will pass federal laws similar to the state laws enacted by Blagojevich in Illinois, and Gregoire in Washington state. That means, pro-life professionals who refuse to participate in murder, will be forced to close shop and find another type of job for themselves. Then, we will be left with those who are too weak or confused to protect human life, and worse, with wolves in sheep’s clothing, with pro-death healthcare professionals with an eugenic mindset, who actively embrace this stuff and frankly, are morally on the same level as the Nazi doctor Josef Mengele.

So, there you go, “total transformation of America” - that’s what Barack Obama promised, and that’s what he will deliver also in the field of healthcare. He, and the Democrats, will enact that change by passing immoral laws and regulations.

I am inclined to agree that healthcare will never be the same again. But we can’t possibly know how it will turn out in the short term of in the long term.

Obamacare, at its core, is a plan by which the government can determine healthcare by determining what insurers will or will not provide, and by expanding Medicaid to cover more people. Obama didn’t want Obamacare. He wanted a Canadian-like full socialized healthcare system. There are those, and I am one of them, who believes Obamacare was doomed to failure from the start, and was intended to fail. It was intended to become so onerous that popular opinion, hating insurers even more because government mandates and regulation would make it so expensive and difficult, would opt for socialized medicine.

Whether intended or not, Obamacare is going to be a miserable experience for the American people. Sure, it does subsidize middle class people with the money of other middle class people. (Not much else) It does do that. But if the cost is increased enough due to the mandates, the subsidies will probably become meaningless.

 

[SouthCatholic]

I would like to know why this mother is refusing to sign a HIPAA release form to allow the hospital to release the FULL details about why this child is being denied the transplant. It seems the mother has latched onto the mentally disabled argument and is ignoring what seemed to have been a full medical work-up that resulted in the denial. We are only getting one side of this story and it remain that way as long as the mother refuses to allow the hospital to release more details.

At this point, I am siding with the medical professionals until I get more information.

 

[Ridgerunner]

I would like to know why this mother is refusing to sign a HIPAA release form to allow the hospital to release the FULL details about why this child is being denied the transplant.

Possibly for the same reason you wouldn’t allow your child’s full medical record to be released to the media.

 

[Trader]

I have been watching this thread since its first incarnation and was glad when it was closed the first time. I understand that it raises important issues that are very much within the scope of what CAF forums are about. I am just concerned that there are so many inaccuracies in the story that it is not a good starting point for discussion. It is being used to push some kind of agenda.

In 2006 my sister had a kidney transplant and I was tested to be her donor. We had some major advantages in the process. The surgery was done at Northwestern Memorial Hospital in Chicago, which is the most experienced in the Midwest for kidney transplants. They do 7-10 transplants per week. They have nurses whose full time job is to explain the very complicated procedures to the families of recipients and donors. They publish a comprehensive booklet explaining everything from the functions of the kidney to the nuts and bolts of the surgery and recovery, and the selection process for who can receive and who can donate a kidney. Our sister-in-law has a brother-in-law who is a surgeon with a related specialty and who was a Northwestern graduate. He recommended Northwestern to us and because he knew our family and members of the transplant teams personally, he was able to explain things in our homes in a way that was less tense than the hospital environment. The medical personnel were also dealing with a college graduate of above average intelligence(you just have to trust me on that). The process of becoming a living donor also requires individual counselling to make sure you understand the risks and are acting freely. I was able to see a very smart, wise, and holy priest who was the vicar general and chancellor of our diocese and had decades of experience working with hospitals. We had known each other for 20 years.

This stuff is so complicated that even with all those advantages I still formed some erroneous conclusions. I remember being convinced that my sister was sure to die if I was turned down. I remember an incident at a supermarket when another shopper did something rude and the first thing that entered my head was that if I confronted him:

1. We might get into a fight.
2. I might be injured.
3. I could not be a donor
4. My sister would die

I don’t blame the mother in the story for being upset. There is too much information to absorb when you are already in an emotional state from having a loved one with serious health problems. The process has a way of taking over your whole life.

I will go into the many things that I believe are erroneous in the story if you like, but the main one came from another article I found about the illness that afflicts her child, Wolf-Hirschhorn syndrome. gma.yahoo.com/mom-says-tot-mental-delays-heartlessly-denied-transplant-160808540–abc-news.html

The important part of the article is this, **"Patients can be denied an organ transplant for a variety of reasons, according to the American Society of Transplant Physicians. Transplantation will not be offered to those would could be harmed by the surgery itself or by the immune-suppression that is required to prevent organ rejection.

Patients with weak immune systems or a high risk of infection, such as some children with Wolf-Hirschhorn Syndrome, cannot be immunosuppressed, according to those guidelines."**

This child is not being denied a transplant because she suffers from mental disabliity. She is being denied a transplant because it cannot possibly succeed and it is unethical to subject two people to major surgery when there is no proportionate good to be gained. I understand that is immensely difficult for any mother to accept that, but it is one of the reasons the criteria for transplants have been worked out in advance rather than trying to reinvent the whole process for each patient.

 

[LemonAndLime]

I have been watching this thread since its first incarnation and was glad when it was closed the first time. I understand that it raises important issues that are very much within the scope of what CAF forums are about. I am just concerned that there are so many inaccuracies in the story that it is not a good starting point for discussion. It is being used to push some kind of agenda.

In 2006 my sister had a kidney transplant and I was tested to be her donor. We had some major advantages in the process. The surgery was done at Northwestern Memorial Hospital in Chicago, which is the most experienced in the Midwest for kidney transplants. They do 7-10 transplants per week. They have nurses whose full time job is to explain the very complicated procedures to the families of recipients and donors. They publish a comprehensive booklet explaining everything from the functions of the kidney to the nuts and bolts of the surgery and recovery, and the selection process for who can receive and who can donate a kidney. Our sister-in-law has a brother-in-law who is a surgeon with a related specialty and who was a Northwestern graduate. He recommended Northwestern to us and because he knew our family and members of the transplant teams personally, he was able to explain things in our homes in a way that was less tense than the hospital environment. The medical personnel were also dealing with a college graduate of above average intelligence(you just have to trust me on that). The process of becoming a living donor also requires individual counselling to make sure you understand the risks and are acting freely. I was able to see a very smart, wise, and holy priest who was the vicar general and chancellor of our diocese and had decades of experience working with hospitals. We had known each other for 20 years.

This stuff is so complicated that even with all those advantages I still formed some erroneous conclusions. I remember being convinced that my sister was sure to die if I was turned down. I remeber an incident at a supermarket when another shopper did something rude and the first thing that entered my head was that if I confronted him:

1. We might get into a fight.
2. I might be injured.
3. I could not be a donor
4. My sister would die

I don’t blame the mother in the story for being upset. There is too much information to absorb when you are already in an emotional state from having a loved one with serious health problems. The whole process has a way of taking over your whole life.

I will go into the many things that I believe are erroneous in the story if you like, but the main one came from another article I found about the illness that afflicts her child, Wolf-Hirschhorn syndrome. gma.yahoo.com/mom-says-tot-mental-delays-heartlessly-denied-transplant-160808540–abc-news.html

The important part of the article is this, **"Patients can be denied an organ transplant for a variety of reasons, according to the American Society of Transplant Physicians. Transplantation will not be offered to those would could be harmed by the surgery itself or by the immune-suppression that is required to prevent organ rejection.

Patients with weak immune systems or a high risk of infection, such as some children with Wolf-Hirschhorn Syndrome, cannot be immunosuppressed, according to those guidelines."**

This child is not being denied a transplant because she suffers from mental disabliity. She is being denied a transplant because it cannot possibly succeed and it is unethical to subject two people to major surgery when there is no proportionate good to be gained. I understand that is immensely difficult for any mother to accept that, but it is one of the reasons the criteria for transplants have been worked out in advance rather than trying to reinvent the whole process for each patient.

Thank you for posting that. It certainly makes much more sense now.

 

[vz71]

I would like to know why this mother is refusing to sign a HIPAA release form to allow the hospital to release the FULL details about why this child is being denied the transplant.
Ridgerunner;8839712:

Possibly for the same reason you wouldn’t allow your child’s full medical record to be released to the media.

I would release everything if I believed it would help get my child the transplant.

Refusing to sign the release seems odd to me.

That being said, where is the documentation behind this piece of information? I have not been able to find support for any refusal to sign a HIPPA statement.

 

[LemonAndLime]

I would release everything if I believed it would help get my child the transplant.

Refusing to sign the release seems odd to me.

That being said, where is the documentation behind this piece of information? I have not been able to find support for any refusal to sign a HIPPA statement.

My friend, it is more the lack of any documentation that suggests there has been a refusal. We must assume that no statement has been signed as the hospital have stated they cannot clarify their position further.

 

[CDB1718]

I don’t know where to start! I guess with saying that I would like to see some statistics to support the assertion that most children with a learning disability have epilepsy.

I suggest learning about the effectiveness of the ketogenic diet and the ineffectiveness of antiepileptic medications, the support the ketogenic diet has as a first-line treatment instead of its regulation to last defense for retractable epilepsy, and the concerns doctors have in switching away from a pill that takes 5 minutes to prescribe to a diet that takes education and vigilance to maintain. Then you’ll understand how regulated healthcare formulas do reduce this to a decision of finances.

The doctor doesn’t value Amelia’s life because she has an intellectual disability. We live in a culture which doesn’t value the life of a person with intellectual disability. The pro-life culture rose to this child’s defense and said her worth should not be judged by her IQ. A few people said it should. A few people said they want to judge her worth on their own criteria and since they don’t have enough information they’re withholding judgment. If you were the mom standing in the middle of this explosion of support, would you say to yourself, “Maybe if I released her 4” thick medical record with every test, procedure, evaluation, prescription, sneeze, and bowel movement noted then the public would judge her more worthy!"? I doubt the idea crossed her mind, much less was rejected.

 

[LemonAndLime]

I don’t know where to start! I guess with saying that I would like to see some statistics to support the assertion that most children with a learning disability have epilepsy.

I have supplied it if you kindly read the thread.

 

[CDB1718]

I have supplied it if you kindly read the thread.

I’m sorry, but I don’t see it. Will you please point it out to me?

 

[EmperorNapoleon]

There is a very limited supply of organs so they should be given to those who have the greatest odds of surviving and adapting to the transplant, will lead a better quality of life, and contribute the most to society. Why sugarcoat it? Wasting organs on people who fall outside of that category is unethical and irresponsible…plain and simple.